An Open Letter to My Friends and Family: I Am Surviving

I want to tell you what it feels like to wake up in a bubble. To wake up and look around to find the world is far away and your pillow is not real, or not as real as it was when you went to sleep. When you thought to yourself, “Great day. No blips on the radar. Everything’s alright.”

I want to tell you what it’s like to walk around wrapped in a fog-like haze. For your children to speak to you but you can’t focus on their faces and their voices sound like they are filtered through a can. Like they are wavering echoes in the distance and even when they hug you, say “I love you, Mommy”–even when their bodies are warm against yours and you are laying kisses on them, you aren’t sure if this love is real. You feel guilty. You feel ashamed. You try to look at them and can’t see them because your eyes don’t hold still, or if they do they only focus on a nose or a freckle or an errant hair.

I want to tell you what it’s like to wake up one day fully present. To feel ease in your heart because everything is so normal. To congratulate yourself because you were told you could do it. Your friend said, “You just shrug it off. You just put a different story in your head.” And your story is different now. You check off your multipage list with efficient abandon. You treat yourself to a latte. You skip your makeup because you don’t need to fool anyone. You don’t need to trick them into believing you will remember what they say or that a voice inside isn’t screaming at you to get. out. of. here. It’s too hard.

No lie, most days the world is far away and I wonder if I’m slipping into another dimension. It’s like swimming, but the water is thick and heavy and I never get anywhere. I do mean swimming, not treading.

No lie, I hate telling people I need a break. I hate wondering if my face is making the right expressions. I hate stepping into the bathroom and practicing my smile in the mirror. I try to get it all the way up to my eyes. I hate the effort of relaxing my jaw so I don’t get a headache. I hate the feeling of being not quite here. Of being not quite anywhere. I hate it when you tell me to shrug it off. When you say it’s easy. When you say I can do it. When you discover your absolute suggestions aren’t enough and tell me maybe I should seek professional help.

I want to tell you what it’s like to jolt awake in the dark with your heart racing. To find darkness in darkness through dreams. To struggle awake, shake yourself, roll side to side to slow the beating. To pick off the subconscious webs. To strike your path back into daylight only to find the shadow coats you from the inside. No shower will wash it away. No affirmation with disappear it. You cannot think your way out so during the day you don’t hear words like dramatic, melodramatic, overreacting, loosen up, big deal out of nothing, just calm down, you’re fine, you have to change your thinking, have you tried meditation? You cannot choose something else. You didn’t choose this. You would never choose this.

It’s unsettling, and people look at you sideways when you say you have anxiety. When you shut down, go silent, disappear mid-conversation for no apparent reason. When you talk in circles because you aren’t sure if anyone can understand you. If you said it right the first three times. If you are making any kind of sense because you don’t make sense to yourself.

I want to tell you how hard it is to know why I am this way. How hard it is to self-advocate. Admit I need to walk away. Tell you why I am this way. Tell you I am this way. Tell you I am triggered, or having a panic attack, a flashback, or any other trauma response. Use words pop culture has skewed outside their true experience. Use the words meant to keep me safe but only put me in more danger because they have been equated with unnecessarily negative and anti-intellectual when really, they are the bridge of compassion that leads me from victim to survivor.

I want to tell you how much those words sting my tongue. How they crawl red across my cheeks and make me certain I’m a liar. How your sigh when I am working hard on just being lashes me down.

Anxiety, to me, doesn’t mean getting wound up for a little while. It means body numbness, headaches, backaches, clumsiness, tremors, feeling cold, rapid heart rate, expansive fear, stuttered speech, and words tumbling out in the wrong order. For days. For weeks sometimes. Even with therapy. Even with familial support. Even with clean eating, supplementation and medication.

I want to tell you that not all anxiety is the same, and I know the difference. But most of the time my anxiety rides me like the tearful child on my back who just scraped her knees. Who needles me between my shoulder blades where I can’t reach. Who I am trying to comfort as she squeezes my neck. Who is pushing me down and pulling me close and nestling against me to stake her claim over who I am to her.

I have my own set of issues and I think it’s important we all try to educate each other to instill some compassion in this world. And telling these things is really hard! And you told it so well! Brava.

I’m thankful that I found this very truthful piece about anxiety. I actually had a doctor completely dismiss my concerns regarding my own anxiety last week AFTER I told him I wasn’t interested in antidepressants. Thank you for sharing your stories. Take care ~mmm

Whoa: “No lie, I hate telling people I need a break. I hate wondering if my face is making the right expressions. I hate stepping into the bathroom and practicing my smile in the mirror. I try to get it all the way up to my eyes. I hate the effort of relaxing my jaw so I don’t get a headache. I hate the feeling of being not quite here. Of being not quite anywhere.”

That bit I could particularly relate to. I often lay awake in bed at night for an hour working to unclench my jaw. This is important and it helps to know I’m not alone. I hope it helps you to share and find out that you aren’t alone either. <3

Thank you SO much for writing such a heartfelt and eloquent blog on this. I can relate on so many levels and yet again not on others. This post brought tears to my eyes, both happy and sad. To understand you’re not alone while never wishing these feelings on others is hard. All I can say from the bottom of my being is – Thank You. This is exactly what I needed to see and hear today and always.

Thank you so much for sharing, my brother suffers daily. As a close family we love him and try to be there for him but may not completely understand. With knowledge comes power, the power to hopefully be more helpful in the future.

Superb! This is sadly so true and very relatable. I had PTSD for a about 6 years, now i work as a trauma therapist. I specialise working with women after traumatic births. I’m hoping its okay to share with the women i work with on my fb page, as i know may women will nod in agreement at every word. That some may show their husbands, hoping they’ll understand and some may repost, hoping friends may get the hint. Finding words can be so hard sometimes and i love how this post is so raw and so real. Thankl you so much for sharing x Lindsey Crockett

I just want to thank you for sharing of yourself like this. A friend shared this piece on her FB page along with a message of exasperation about how some who have healed seem to feel that if they can do it, anyone can, and SHOULD.
Not many people understand the craziness of my childhood. I wasn’t molested or abandoned or outright emotionally abused, “so what do I have to complain about?” I have been made to question my trauma and depression and anxiety, but your piece has such a freeing nature. I particularly related to you mentioning how you repeat yourself not sure if others understand what you are trying to say. I have never heard anyone else mention this before…I never stopped to link his to my anxiety.
I read a few more of your posts because I enjoyed this one so very much and you write with such an amazing understanding of the words you are using. The visuals and feelings you conjure are fabulous, so thank you for sharing yourself with your readers!

Jess, Thank you for this beautiful comment. It’s a wonderful feeling to connect with someone else this way. I often have to do it through writing because trying to share this jumbles things. I have a piece called Trauma Trumping–that’s when you compare your trauma or struggle to others. When you said “so what do I have to complain about?” I thought there are people in your life who might need to read that post. And if you want to express yourself in writing, you can type “expressive writing” into a search engine or look at some of my resources here: http://honeyquill.com/2015/08/17/free-resources-for-creating-a-writing-practice-for-self-care/ Thank you again. My heart is flooding.

I am already planning to start writing with the help of your posts. You are nowhere near me here one central NJ, unfortunately!
My biggest reason for trying to recover is my two sons, 6 and 7. I see how my struggles affect them and I want to heal so I can be more present for them. I can tell you struggle with the same thing.
My mother was a writer and manic depressive. Her emotional distance and then huge emotional presence were such a difficult thing for the child in me to figure out. I have turned to writing to get my feelings out but never used it in a structured way to heal. I am excited about doing some work.
Thank you, again!

Jess, I’m so happy to hear that! I’m working on a resource post that reaches beyond my site. There are many, many excellent expressive writing coaches our there. And if you want to work with me, we can talk about what that would look like anytime.

Much in this post resonates for me. This phrase in particular stood out: “words pop culture has skewed outside their true experience.” YES. This makes things so much harder, when they think we’re having the same conversation — and only I know we are not.

I am glad you are surviving. I am glad so many of us are here, doing just that.

Alice, I saw a conversation in social media a few days ago that was a partial stimulus for this piece. Some friends were making fun of being “triggered” and equating it with “irritated.” Frankly, I hate having to use that word, but I truthfully *need* it. I need labels and dedicated language to know what’s happening in myself. And now I think I know what I will write for Stigma Fighters, so thank you deeply for sharing yourself and commenting here. 🙂

[…] a writer wrote a great, personal blog post about her experience of anxiety. not all of it is the same for me, but there were some lines she had that hit me like a ton of bricks because she was highlighting things i do all the time…that i often don’t consider signs of my anxiety…but they are. and when i read it, it hit me that i am more anxious and stressed now than i’ve been in a while. here is some of her post. you should read the whole thing: […]

My husband found this the other night. He asked me if any of this was true for me, because if bits of this were true it would make him very sad. So I read it, with him sitting there, and immediately found so much of it to be true. I was literally sobbing by the time I reached the end. He said he hopped the seeing this would help him be more sympathetic. I have a lovely life, and always have, and yet I have always doubted my relationships (except with my husband and father). I never felt I could be a truly loving, nurturing mother – and though my daughter loves me and appreciates me, she is very tuned into this struggle. I always felt most other people had a much better grip on friendship than me. Though I do have lovely friends who rally round me when they think I am in need. I’m not afraid of ‘things’ but I am afraid that I do not know how to be me. It’s interesting because I’m just now seeking a bit of professional help, not so much because I feel crazy, but because I hope to find a steadier way forward. And yes, I’ve found myself frustrated and in tears, because a few of these people are so convinced I just need to find better strategies, when I know my life is as good as it is because I have exhausted clever ‘strategies’ to get me where I am. This article was a godsend – just because it is so amazing to know that there are ‘others’ with the same experience.

Shannon, Thank you for sharing this. Now I’m in tears. If you get a chance to look at the post on this site titled “She Could Love Herself,” maybe that will reach you as well. It’s a complement to this. Not the flip side, just the “good” reality that is part of our complication as humans. Xo

[…] illness. Stigma Fighters invited me to write a piece for them after reading my description of what anxiety feels like. I have long enjoyed Stigma Fighters and the work they do, so I was happy to put a piece together. […]

So good and so very hard, Shawna. I’m a very new FB friend, but reading this brings me close to your heart and your deep concerns. These “hidden illnesses or disabilities” are mysterious to those who don’t have them. It would be hard for me to see your anxiety, or I imagine that to be true.

I have Meniere’s Disease–hearing loss, tinnitus, dizziness, and sometimes an inability to do anything except lie on the floor until the Valium kicks in. The extreme meltdowns haven’t happened for a few years because I have better meds that prevent them, but I struggle to hold a balance every day. People don’t notice when I’m not quite in my body but floating out somewhere without a thread. They don’t remember I need help with hearing them and reading their lips.

I think it’s our job to speak our truth and help others glimpse what it’s like to live in your world and body. Thank you for being courageous and honest. Thank you for making me feel sweet concern for the illness you endure.

Elaine, I have been thinking about this comment since you posted it. It fills my heart, and I was hoping I could find words to properly express that. Please know that your words are an honor. I’m happy to share my journey with you and join you on yours. <3 thank you.

[…] An Open Letter to My Friends and Family: I Am Surviving. This is by far my most-read piece. Readers arrived in droves to this site.Within a few days, I was invited to become a Huffington Post blogger and share my piece there. I did and it went viral. It had another brief run around Thanksgiving. Again, correspondence galore from this piece, and if my goal of helping just one person was a daily one, I’d be set for years on this piece. HuffPo translated the letter into four languages and released it in five countries where it has had considerable success. This astonishes me. I knew I wasn’t alone in my experience of anxiety. Actually, I wrote the piece because someone I loved was struggling and I wanted him to know he wasn’t alone. I didn’t anticipate the world responding with “me too! […]

Reblogged this on homemade naturally and commented:
I hope you think this is something important to read to have an understanding of what someone may be going through because sometimes all they need is for us to UNDERSTAND!

Can I just say what a relief to find someone who actually knows what theyre talking about on the internet. You definitely know how to bring an issue to light and make it important. More people need to read this and understand this side of the story. I cant believe youre not more popular because you definitely have the gift.

i am not sure how I just landed here Shawna but I know that the universe had something to do with it. There are numerous things we have in common, including IU 🙂 But most importantly I have been seeking a way to express myself to my family who is not capable of empathy and really dont care. I am sending this. love to you

I dont know how I got here right now, but I had one of my lowest days in a bit today with my mom regarding my family and I didn’t remember reading this before but needed it so badly that I was going to write you, but I already did. above. a year ago! The universe is wonderful, hope u are so well love!

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Shawna Ayoub Ainslie

Shawna Ayoub Ainslie is a coach, writer and creator of online safe spaces for artists engaging issues of survivorship and social justice. The Honeyed Quill is her writing home. Find her here or facilitating #LinkYourLife every Friday on Twitter, and #LinkYourLife Connection, an artist support forum on Facebook.